Paige W Lake1, Monica L Kasting1,2,3, Marleah Dean4, Lindsay Fuzzell1, Janella Hudson1, Rodrigo Carvajal5, Damon R Reed6, Gwendolyn P Quinn7, Susan T Vadaparampil8,9,10. 1. Department of Health Outcomes & Behavior, Moffitt Cancer Center, Tampa, FL, USA. 2. Center for Immunization and Infection Research in Cancer, Moffitt Cancer Center, Tampa, FL, USA. 3. Department of Public Health, Purdue University, West Lafayette, IN, USA. 4. Department of Communication, University of South Florida, Tampa, FL, USA. 5. Department of Biostatistics and Bioinformatics Shared Resources, Moffitt Cancer Center, Tampa, FL, USA. 6. Department of Interdisciplinary Cancer Management, Moffitt Cancer Center, Tampa, FL, USA. 7. New York University School of Medicine, New York, NY, USA. 8. Department of Health Outcomes & Behavior, Moffitt Cancer Center, Tampa, FL, USA. susan.vadaparampil@moffitt.org. 9. Center for Immunization and Infection Research in Cancer, Moffitt Cancer Center, Tampa, FL, USA. susan.vadaparampil@moffitt.org. 10. College of Medicine, University of South Florida, Tampa, FL, USA. susan.vadaparampil@moffitt.org.
Abstract
OBJECTIVE: Adolescent and young adult (AYA) cancer patients have distinct medical and psychosocial needs and fertility is a key concern. Early age of onset is a risk factor for hereditary cancer and AYAs are more likely to experience reduced fertility. This has implications for future family building decisions and fertility preservation (FP) and genetic testing/counseling (GT/GC) education. METHODS: Patients diagnosed with cancer between the ages of 18 and 39 and health care providers (HCPs) who treat AYA cancer patients were recruited from a single institution. Qualitative interviews explored AYA patients' and HCPs' concerns regarding their experiences discussing genetics and FP. RESULTS: The majority of patients (n = 17) were female (59%), and the majority of HCPs (n = 18) were male (67%). Overall, participants had differing perceptions of FP and GT/GC-related information provided during the clinical visit. Patients indicated initiating the conversation about FP and did not recall HCPs discussing GT/GC with them. HCPs indicated patients were often overwhelmed with too much information and comprehension of this discussion is limited. HCPs also felt patients' emotions/beliefs determined their information-seeking behavior specific to FP and GT/GC. Participants felt educational materials should be developed and delivered in a video format depicting a patient-provider interaction or patient testimonial. CONCLUSION: AYA patients are often overwhelmed by a cancer diagnosis; the complexity/volume of information regarding FP and GT/GC may hinder understanding and decision-making about family building. Educational materials that help patients understand what questions to ask HCPs about FP and GT/GC should be developed to improve knowledge, psychosocial well-being, and future family building decisions.
OBJECTIVE: Adolescent and young adult (AYA) cancerpatients have distinct medical and psychosocial needs and fertility is a key concern. Early age of onset is a risk factor for hereditary cancer and AYAs are more likely to experience reduced fertility. This has implications for future family building decisions and fertility preservation (FP) and genetic testing/counseling (GT/GC) education. METHODS:Patients diagnosed with cancer between the ages of 18 and 39 and health care providers (HCPs) who treat AYA cancerpatients were recruited from a single institution. Qualitative interviews explored AYA patients' and HCPs' concerns regarding their experiences discussing genetics and FP. RESULTS: The majority of patients (n = 17) were female (59%), and the majority of HCPs (n = 18) were male (67%). Overall, participants had differing perceptions of FP and GT/GC-related information provided during the clinical visit. Patients indicated initiating the conversation about FP and did not recall HCPs discussing GT/GC with them. HCPs indicated patients were often overwhelmed with too much information and comprehension of this discussion is limited. HCPs also felt patients' emotions/beliefs determined their information-seeking behavior specific to FP and GT/GC. Participants felt educational materials should be developed and delivered in a video format depicting a patient-provider interaction or patient testimonial. CONCLUSION: AYA patients are often overwhelmed by a cancer diagnosis; the complexity/volume of information regarding FP and GT/GC may hinder understanding and decision-making about family building. Educational materials that help patients understand what questions to ask HCPs about FP and GT/GC should be developed to improve knowledge, psychosocial well-being, and future family building decisions.
Entities:
Keywords:
Adolescent and young adult; Cancer; Education; Oncofertility; Reproductive health